I have a hospital bed, provided by the NHS, in order to help manage my posturally dependent fainting, and to a lesser extent, my joint problems.
This service is supposed to be a simple right: that is, if you have a level of need that justifies it, it is supposed to be provided.
A few weeks ago, the bed developed an appalling creak which was waking me up when I turned over. I am not, moreover, a turn-over-and-go-back-to-sleep person; such a problem involves a dramatic lack of sleep, with all the knock-on effects on already poor health of that.
After a few tries, I starting pulling the mattress – which is really too heavy for me to handle – off the bed and sleeping on the floor. Despite various and considerable difficulties, this answered better than trying to sleep on the bed.
I called out an engineer. This, incidentally, involves an absolute demand that you should be available all day so they can come when they like. You are lucky if they have any respect for which day. This is bad enough in commercial services, but at least people mostly don’t need things like their internet or electricity mended very often. When it is a normal, frequent part of life, it becomes quickly impossible – particularly if you need to sleep during the day on a regular basis.
If there is one thing I would like to see all the disability charities rise up together in protest of, it is the total refusal to respect the value of the time of people with disabilities or health problems, and their need to organise their lives around normal activities just like everyone else.
These “services” generally have no respect even for the needs of the management of the very health problems for which we need their services – such as napping during the day – let alone for other life commitments such as work, study, or childcare.
This is despite both the social pressure towards, and the real sense in, trying to live as normal a life as possible despite disability. We are pushed to do so – and I think it is quite right in theory even if the pressure is falsely thought out – but are then prevented from doing so by the failure of services to operate in a manner that makes it possible.
Health professionals turn up forty minutes before a home appointment and make out that our protests that we are not available to them until the appointment time are unreasonable, transport services demand to spend hours dragging us to and from an half-hour hospital appointment, equipment services expect us simply to be there when they like.
The engineer poked the bed, said it was a problem with the make of bed and that I should ask them to replace it with a different make, as this one was bad with squeaking, and also suggested that I oil it, as he was not allowed to do so. This is, incidentally, a concern to do with allergies and damage to other property.
I tried oiling it, not wanting to face the disruption of trying to get it changed. It didn’t work.
Three weeks ago, the request was made that they change it.
Two weeks ago, a phonecall from us to them was made asking what was going on.
We were told that the request had gone through, that they would do what I asked, and that the matter was marked as urgent.
Today, following further protestations, I was rung up, by someone explaining that they could not put the request through for some reason they didn’t understand, and that they had a long waiting list, and that there wasn’t anything they could do about it.
Actually, after protestation and discussion, she agreed to change the bed for another of the same make, for another probably squeaking bed, and then see about changing it for one of a different make which was not so likely to keep causing problems with squeaking. Or otherwise, I could continue to struggle sleeping on the floor for an indefinite length of time, while she ran hither and yon trying to get it sorted out.
What a total waste of everyone’s time and resources.
The squeaker bed, is, moreover, apparently the newer make.
Then I was told that if I could not ring up to arrange it myself – which I can’t – using the phone is difficult and my stamina is exhausted at the moment – there would be a problem because the people actually responsible for delivering the thing, tried to ring me up and didn’t get through first time, they would cancel the order.
Does anyone who hasn’t tried to use these services, have the slightest idea that they treat us like this, without dignity or reason or common sense?
That they behave as if we were merely disabilities, for them to throw a bone to if we happened to come and sit nicely, when they call?
That the slightest attempt to have any sort of life or existence outside the beck and call of the health “service” is something that has to be fought for at every turn.
If I am political over this, it is at least totally anti-socialist. The fewer things one has to depend on other people’s efficiency for, the better. The less one has to deal with the judgement of other people about how you ought to live, the better – and if the idea is gathering in and sharing out, what you get is what someone else, some impersonal and faceless body with neither interest in or knowledge of the realities of your life, decided you ought to want or need.
However, I do think the policy of these external contracts with providers should be reviewed. For all I know external contractors are still less bad in providing than direct employment by government services, but it does not work in healthcare, in the sense that, in my experience at least, it consistently results in unacceptably bad service.
We shall see what happens now. I have now been sleeping on the floor, dragging the mattress on and off the bed, for weeks. It has been down on their list as urgent, for weeks. And yet, only today, and only upon our protest, have I been rung up to be told that they cannot do what I ask.
It is a serious drain on energy I don’t have to spare for the very reasons of bad health over which I need the provision in the first place. As is, of course, the lack of the functionality the bed is supposed to provide in raising and lowering me slowly, or raising my feet, when my dysautonomia is playing up. I cannot move the thing on my own; I have no other bed to sleep on.
When they put it there, they made me dependent on their service working, for a major part of my welfare. Sadly, and even more sadly – as usual, the practical reality is one of being let down.
Would I actually find it easier to manage my health, without the help of the medical equipment that I am judged to need and to be entitled to, given the impossible price that comes with its provision, of the control of my life by, and an endless dependency on people who cannot, in practice, be trusted with that dependency? Without the price of being left disempowered on the floor, in the hands of people who simply do not do what they have said they will do urgently, for weeks on end? Without the price of endless following up and complaining and protesting?
I don’t know. But there is something very wrong, when it is so much as possible that the question could be answered, “yes.”